Writing A Book On FM/MFS/CFS..Need your input!!!

Discussion in 'Fibromyalgia Main Forum' started by Vicque, Jan 3, 2003.

  1. Vicque

    Vicque New Member

    Dear Friends: My name is Vicque. I have written a few poems on this website. I have finally began to write a book on FMS, MFS, CFS, Anxiety Disorder.....I have put alot of thought into this. I would like to hear from you, because the book is not just based on my journey with this disease, but yours as well. You are just as important. I am asking for your input. I will not use names. I would just like to know the 5 most important things in your life with this disease that have bothered you the most. Ex: jobs, relationships, depression, pain, denial, and on and on. I myself know that naming only five is hard, considering the hundered of things we could mention. I want your voices to be heard. I want to stop the ignorance, the differential treatment in the work force, the way our friends and family treat us. I will go to no ends to find someone to listen. I have already written Oprah, Montel, and will be hitting up state rep's, whatever it takes to motivate anybody to do something to help us fund more research, recieve SSI without being treated as emotionally nuts! Thanks for your time or any responses....Peace....Vicque
  2. nogilroy

    nogilroy New Member

    i think this is great what bothers me the most is will my kids get this or my sibes as been married for 25 years if i do not talk about it . it is not there hubby likes it that way . i think it has made me stonger in this but weaker in other things . for the pain i drink and smoke no meds have seemed to work i give up . i will not be a guinea pig or a test rat to the doc i do not work now quit in 97 told her to shove it , alot of things happened was not even caring what my daughter said to me or was i eatting was not worth min wage . thank god i do have a good husband . i think it is just because he can not fix it with me it is hard for him to deal with . i think my mother had this fm always had pain but she past away with cancer 10 years a go will i get cancer .as for friends they know but they have there own things that they have to go though like cancer in the family . as for sibes somtimes i do not think they care , as for my sister in laws i could not ask for better they seem to under stand one reads about it and one has a friend who has fm , and one that tells me new drugs at times or herbal things as for deperssion i do not think i have much i just deal with as much as i can .i hope this helps sorry to vent and good luck
  3. Fibromiester

    Fibromiester New Member

    I would love to share only 5 things (lol), Do you want more details? I have FM/MFS/CFS, among others, housebound, almost bedbound. My 5 topics of priority would be:1.WORK LOSS, mainly stregnth; 2.EGO or sense of well-being, and thinking good about myself; 3.DEPRESSION has been a problem since my teens-so now I fight it more than ever-not DENY it, but fight it off; 4. ADVICE ...If I tell someone I have FM, and she finds out- or if a family member knows- THAT I DRINK COLAS !! , they will belittle me, lecture me, etc. 5. MY RELATIONSHIP WITH GOD. I used to love Him with all my heart, now I am puzzled at my "pulling away"..... hope this helps
    [This Message was Edited on 01/04/2003]
  4. blondieangel

    blondieangel New Member

    1) PAIN (mutiply that by a million)
    2) CHRONIC EXHAUSTION (multiply that by a million too ;-)
    3) LOSS OF LIFE AS I KNEW IT.
    4) ISOLATION
    5) Inability to function/do what my brain wants me to
    do but my body won't let me :-(

    My daily life begins with sadness and ends with sadness when all is quiet and I'm alone with my thoughts....blondieangel
  5. blondieangel

    blondieangel New Member

    I just wanted to add to my post (even though I all ready wrote 5):

    One of the worst things ~ the way my body 'punishes me' with exacerbated pain and/or exhaustion every time I try to do something fun, (like leave the house to shop or go to a movie with my husband, a family event, etc) - whether it be for a day or 2-4 hours. The punishment for those few precious hours of enjoyment comes on with a vengence...telling me "NO! You CANNOT go out and live like normal people, even though I let you look like normal people"!

    Blondie

  6. Vicque

    Vicque New Member

    Thank all of you who are replying to my request for your input on my book to come. Each reply is a valuable as gold to me because YOUR voices are what counts. Although this book is based on my journey with this horrid disease, my heart weeps for all the unheard voices of pain. I ran state track, cheerleading, basketball....of course that was 20 years ago, but the depression of not being able to do those things much less the ordinary things we do everyday is enough to push any solid mind over the deep end at times. Having been a nurse for 12 years now, (stopped working this last Sept.couldn't hold up to the work load and kids), my self-esteem plunged as well. My goal is to have at least 100 responses to my quest for justice, which can only come from all of you. I have cried tears while reading different people's pain, concerns, unfairness and ignorance of Dr's to treat their pain. My back is burning now just sitting here. Please continue to post when you feel up to it. There are books out trying to prove what causes all this, and that is good. But my goal is to let the world know to the best of my ability what we face 24/7. Love and Peace to All:) Vicque
    [This Message was Edited on 01/04/2003]
  7. ladybird1

    ladybird1 New Member

    The five that immediately come to mind:
    1)Never ending fatigue.
    2) sudden onset of muscle joint pain for what seems like no reason
    3) Feeling like I've been run over by truck only to have someone tell me "you look fine"
    4) Lack of more definitive tests to prove what causes
    our ailment
    5) Depression over pain, fatigue, lack of understanding
    by non-sufferers
  8. jojojem

    jojojem New Member

    Vicque
    I should have put my infomation on yours instead of Marcus's
    symptom poll.He listed eight things that he's had with this
    disorder of FM. I have had all the problems and more so feel free to go to his symptoms poll and get what I wrote and you can you use it for your book.The one thing he did'nt
    have on there is I.C. Interstial Cystitis and Celiac disease.
    I have been on medicine for all my life.I have a total of 11 pills a day.I start out with seven just to be able to function in the morning.I have five doctors but just one
    who manages my pain and she is my phscyatrist because it's
    not good to have so many doctors give you different medicines.So she is my pain management.She gives you what
    she thinks you need and will help you instead of giving what
    you think you need.She listens and writes and ask questions
    the whole hour that i am with her.She watches your eye contact with her and your facial expressions and she can tell how much pain your in by listening and watching.What is so sad is every time I see her the pain is somewhere else.Mainly this year it's been with the five natural teeth
    i have left to save so they can fit me with a apartial to fit with my upper false teeth.The pain has been so excruating in my mouth that i have literally sat in a chair all day after taking all my meds with a heating pad on the left side of my face.By the Grace of God and the support of
    my husband that I'm still here.Plus I was adopted and I just found my mother after 45 years.She didn't know she even had a daughter.They told her I was stiil born.Somehow I managed to get my medical records from the hospital where i was in for 5 months and it shows I was a very healthy baby.The local news did a segment on me and the paper for our city did a article on me.I too would like to write a book of my life because its a very complicated and I was hurt by my adopted parents they lied and stoled 45 years of my life with mymother.I started having a lot of the symptoms I have earlier in my child and teenage life,but my mother wouldn't take me to the doctor.I have been very dramatized since i was nine years old,and then twice when i was married to my first husband.They say sexually traumatized can also effect or had already started to bring on symptoms in my starting of my adolescent years.So I will gladly work with you on your book on informing how I explain
    to people is that I'm a prisoner in my own body.
    I had a very good job these last four years that I had to give up because my concentration level was nil.So my boss had to let me go for the good of his company.Infact I just had a very nice long conversation with him that I would gladly answer the phones for him but I couldn't do the work
    I use to do and he understood.He didn't know what was going on at the time and either did I at the time.
    I went to Scott-White Clinic in Texas to get a diagnosis for
    the first time,even my family doctor didn't know untill I told him and then he put all the things that I had wrong with me together and he led me to my pschiatrist who has become my pain management doctor.
    So good luck with your book and if I can help you in any way just e-mail me at dkluver@itlnet.net than we can get indepth of what I take and how it helps or hinders.Sorry to go on ratteling so much but this is the best support page or best support because you can relate with what other people are going through.
    God Bless You and keep trying with Dr. Phill and 48 hours and 20-20 & so on.Keep me informed. After you get your book wrote and published maybe you canpoint me inthe direction I need to go to get mine written.
    Thanks
    JOJOJem
  9. VickyB

    VickyB New Member

    I thought a good topic for your book and the message board could be everyone's worse story that they have had that relates to fms. I have a painful story about TMJ caused by fms if you are interested. Just a thought. Vicky
  10. obrnlc

    obrnlc New Member

    hi vicque--good for you and if i can help out, please e-mail me. (in my bio) If were able to pull together and get some national attention--not the "oprah" kind, but actual legal and medical attention that this is a very real and debilitating illness, what an accomplishment that would be! I would like to see it recognized by the general population as REAL, i am an RN and never thought of it as any more than "one of those yuppy illnesses of the month". i think that is why i have had such a difficult time emotionally, as a medical person i needed to SEE and TEST to see it as something real. So many people think of fibro as a "cop-out" and that is what is so depressing! I'll try to narrow it down to 5 things, if possible. I have battled this trying to make sense of such a wierd assortment of symptoms for so many years, that just to recognize this DD for what it is and to finally MAKE SENSE of something is such a help to me--i would love to see more awareness!(am i rambling?)
    1) THINKING THAT I MUST BE NUTS (all the crazy symptoms and no answers)
    2) KNOWING
    everyone else thinks i have been nuts all these years with all of my odd problems and constant whining!
    3)the overwhelming pain
    4) the loss of thinking and writing skills
    5) needing so much pain meds to function and knowing everyone thinks i am probably just a junkie, because i LOOK so healthy!
    so this is only 5 and how many of us have said "i could write a book" but how many have the brain function and organization left to do it? GOOD LUCK and email me anytime! I found this message board when i was nearing the end of my rope and feel i have found sanity again, just to see everyone elses thoughts, advice and feeling in print! Keep up the good work all of you and I thank everyone out there for there support! Together we Can increase public awareness and find some help! laurie
  11. amilyne

    amilyne New Member

    hi vicque, im glad that you are writing this book and i hope all goes well..it will be nice to see something from our point of views... i am 22 and ive always known that "something" was not right with me..ive always thought that i was a hypochondriac but i knew that i wasnt...in high school i started having problems wth being tired all the time and never being able to wake up on time for school and i was always getting myself tested for mononucleosis and even in my senior year i did an overnight sleep study for narcolepsy..and event though i knew there was something called "Chronic Fatigue Syndrome" i dismissed that idea thinking that it "sounded" ridiculous...(if i only knew then) ..eventually my senior year things became really hard and i was failing all my morning classes and getting really depressed about the fact that all my teachers just thought that i was a "screw up" and was ditching thier classes..i went to my counselor for help and she brought me into the inhouse "counselor(psychiatrist)" to talk but she wasnt really affiliated with the school so she couldnt do anything on that level...i was so frustrated that i ended up quitting school my senior year..which made my depression about the situation even worse...i have yet to go to college because i am scared to death that ill fail out of that too...i am a nursing assistant and i do well but this may of 2002 i was diagnosed with fms and things are becoming much harder than they ever have been..i love my job and want to go on to be a nurse but now that i can barely make it through a shift as a nursing assistant that adds to my fear that i wont be able to do it anyhow...i have to take care of myself and have no help from my parents as i make more money than they do...i cant see how i would be able to go to college and work as much as i have to...
    then as it goes for a social life ..i dont really have much of one..i just cant keep up with my friends which at 22 is ridiculous..this year on new years eve i stayed home and slept..i didnt even bother to see if anyone was going out or having a party...i was having a fatigue flare from the tiny amount of mall time the previous saturday then spent the week at the doctors thinking that it was caused from anything but my cfs, i had tests done for mono,(again)walking pneumonia, anemia, thyroid...which were all normal of course..so i am still in denial at times about all this..
    this year when i was dx with the fms i actually was the one that thought that my doctor was crazy he knew about my sleep problems and he knew about my headaches that i get constantly amongst other things and on a hunch gave me the pressure point test which of course i just about killed him for...he told me that he thought that i had fms and started to ask me if i was ever in pain and really worn out after going out and i said i thought so but because i am a nursing assistant i always just related all my aches and pains to my job, but i had been training for secratary (huc) work at the hospital and hadnt been doing patient care the few weeks after that appt and lets just say that i saw the light and then had a 2ed oppinion with a rheumy... since then my pain has become much worse and im in my first flare...im glad that i know what it from already .unlike so many of us here that went through this without knowing...i am unable to get anything for the pain ...my doc doesnt believe in that sort of treatment...and then when i do end up going to the ER i get drug seeker treatment..i think because i am so young.so needless to say i am FRUSTRAAATED
    i know that this is long and you may use any part of this that you want,if you want to...so in all i feel that i have one advantage to being young is that hopefully they will find a cure of some sort ..this is my story and even though it is similar to everyones it may be a little different because of my age...my main things are that.......
    I am scared that i will have this forever... im 22 and i already feel like im 80...even as much as i shouldnt let this stop me from doing the things i want its very difficult to think about how much i have yet to do
    ...in the area of having children...how will that effect me?, will i be able to care for my children?, biggest-should i even have children? because i want to so bad.
    what about the problems that everyone with this has getting ssi or ssdi?..im 22 --i dont think id be very likely to get that at my age if in a few years i might have to....let alone being able to afford the fight..
    what about finding a husband someday..will he want to deal with my inabilities and be able to live with my lack of ability...
    and of couse so many worries that i cant write as this in itself is slowly becoming a book..lol
    --ami email me if you want..amilyne22@yahoo.com
  12. tgirl

    tgirl New Member

    Hi,

    I have had CFS for nearly 14 years now. The things I've lost, that bother me most, are:

    1. My husband (he divorced me, for a young, healthy girl)
    2. My job - I loved working, and now I have only a disability pension as income. This limits my already limited lifestyle enormously.
    3. My mental abilities
    4. That I'm incapable of caring for my pets as I'd like to
    5. Lack of ability to be sociable, due to exhaustion

    There are of course more, but these are the ones that spring to mind first.

    Tgirl
  13. fibolady

    fibolady New Member

    1. the support of my spouse
    2. love of my daughter (who went with my ex)
    3. things i did for fun
    4. my old self
    5. sense of worthiness

    .....good luck with the book. a book that deals with the ramifications of the dd could enlighten a few!

    warm regards, fibolady

  14. tandy

    tandy New Member

    There is so much to miss.Never take anything for granted, right?You can be well one yr and going thru hell the next. I am 39 yrs old,a mom of three beautiful children.I started to feel unwell or just not right about 10-12 yrs ago...untill things just escalated.I got a Dx of FM,and herniated disks in my low back in 92.
    The top 5 things I miss most......
    #1.Being able to make plans and follow thru.
    #2 Simple things like taking a walk with my children and feeling good about Life!
    #3My job and respect from co-workers
    #4Waking up in the morning and knowing that this day will be painfree and i'll do plenty
    #5This is not something missed-its the worse part of this DD!!Pain,all over. Exhausted!!pysically&mentally(sleep does'nt help,it never goes away~)People you love not understanding at all what this disease is like to live with everyday.
    Thats about all there is to say~ Besides, I wish you so much luck with your book!! Go get em...tell em what its like!!
    Love,
    Tracey
  15. Vicque

    Vicque New Member

    It continues to amaze me of your responses. Just this morning when I got up, there it was on the board, Starla's cry for someone to help plead her case. Over and over we come here dealing with this dd, to once again encounter an idiot. I also know that God feels all the pain we endure from just these sort of people. I almost dare not call them human. However, I myself have dealt with my anger even towards God, as to why me? Yes, too have dealt with my own physical, emotional, and spiritual pain from this loss of what I once knew to be me. I will not quit fighting for all of us. If nothing comes out of this book but to educate the ignorant in a good class of compassion 101, then so be it. But I think after the completion of this book that alot of blind eyes shall be opened, our miracle is yet to come! Keep the peace....Vicque
  16. klutzo

    klutzo New Member

    1. Not being able to earn a living so I can make my life happen the way I really want it, and live where I want to live.
    2. Losing my tolerance and understanding for normal people's petty problems and flaws.
    3. Being able to tell what others are really thinking. Knowing how much they lie has hurt me so deeply, I can't describe the pain, but it's a lot worse than the physical FMS pain.
    4. Slowly having to watch myself losing my mental faculties, which were always my greatest strength.
    5. Not being able to travel to visit the folks I care most about.

    Klutzo
  17. danisue22

    danisue22 New Member

    I think what you are doing is great. We need a voice and it wonderful that you still have it together enough to take this awesome task upon yourself.

    #1The loss of being a functional human being in this wonderful world.

    #2The loss of my husband from lack of understanding and ,he not trying to .

    #3 The loss of joy to wake up to each day, knowing that it's through pain and perservence I must make my way.

    #4The loss of income ,trying to live on 550.00 dollars a month that S.S.I. sends me.

    #5The loss of people that I considered friends,from their lack of understanding and or knowledge about this DD.

    Sometimes it's so difficult to go on ,but each day is still a new day.I try to do my best each day ,even if that's just being able to sit at this computer and read words of encouragement that so many of you have to offer. I'm very thankful that I've found it. It's been a great blessing in the short time I've been here .Thank you all.

    God Bless ,Danisue...P.S. Good Luck on the Book
  18. onesmileymyley

    onesmileymyley New Member

    HI their and what a wonderful idea. well I will begin with the one that bothers me most of this DD. I feel for my family more then anything. I have 5 children and I feel like I can't be the mom I once was. I can't be a coach or jump and run around with my children and I worry that they will reject me in time. The 2nd. is that I am a very fit and I look as though I am healthy so no one really believes I have something so wrong. 3rd is the all around pain. I have it everyday allday long. I am never pain free and at 29 it really sucks. 4th is the fear that my children could get this someday as I no it is a family thing as my mother and sister have it. I hope your book does well...
  19. karmageddon

    karmageddon New Member

    You may already know, but I believe that fibromyalgia is a pretty grim level of mercury poisoning. Mercury was added to vaccination shots for sixty years and people are headed into court as I type this. The first wave is those with autism, 30 million children are being represented.

    I was one of those, born in 1945. I was kept in a basement because my family was ashamed of me and thought I was a bad seed. They hated me. I can't believe they didn't kill me.

    I had fibromyalgia symptoms -- all of them -- 20 years ago and now I have a name for it.

    But when I read the symptoms of mercury poisoning and did some research about the drug companies who injected us with mercury, I learned that it was a business decision to keep people coming back to the drug companies forever with chronic symptoms all through their lives. Sick, huh?

    All the new diseases have the same symptoms to one degree or another.

    The FDA says we were "exposed" to mercury. Were you "exposed" to your vaccinations? Puh.

    Once mercury is in the body, you are poisoned. Period.

    I can't find anyone who can even imagine how one single person could have kept that injected mercury from migrating to the brain, where it triggers the immune system to run and run and run, futilely, until it kills the person it is trying to protect.

    Fibromyalgia is what I call the point of no return.

    Don't misunderstand, I believe that by knowing what is wrong, most people would take such good care of themselves that they will live longer with mercury poisoning than they might have otherwise. But, dang, it is an ugly way to live, huh?

    I am working hard for public disclosure. We have the right to get angry, mourn and accept this atrocity so we can get on with life.

    Since I accepted that I did not escape my vaccinations, I have lost 99 percent of my anxiety, fear and terror about what is going to happen next. What will happen if people never really know that they have been uncomfortable all their life for a reason?

    I'm much more compassionate now and boy,am I angry at the Rockefeller Institute and the drug companies for doing this to us.

    Bess
  20. karmageddon

    karmageddon New Member

    Here is the text of my letter-to-the-editor at Scientific American... this oughta spice up the book some... : )

    To the Editor:

    Your web site poll, showing nearly half of the respondents believing that mercury poisoning is at the root of autism, is one of those Dr. Phil "defining moments" in my life. It is a chilling exercise to wonder how the members of congress would answer the same poll, considering that someone was hellbent on adding a rider to the Heartland Security bill to limit the damages anyone can receive upon winning a mercury poisoning lawsuit. That shocked me nearly as much as the media blackout of the lawsuits that are underway: one representing 30 million children and another representing the enlisted men who fought in Desert Storm.

    I am an autistic child, but now 57 years old and finally learning what is killing me. Mercury poisoning is like being buried alive, one grain of sand at a time. It is a long, drawn out affair marked by relentless discomfort and sporadic outbursts of symptoms that require medical attention. There is no cure and no detection, directly, of mercury that is lodged in the brain, in the hippocampus-amygdala region.

    Under the hood, the immune system is in a futile mobilization to attack mercury embedded in brain tissue that won't dissolve and cannot pass back across the blood-brain-barrier it so diabolically traversed to get into the brain in the first place.

    I have, for twenty years lived with the list of symptoms that are grouped under the disease named fibromyalgia. I believe, from direct experience, that this the phase where the body begins to live with global pain -- a full body headache, I call it -- and the realization that death is the destination of this path. This is easily diagnosed as mental illness, unless the examining psychiatrist has reached that level of discomfort and understands.

    I have been looking for this answer all my life and I am rocked by the relief of knowing. I have dropped 99 percent of my fear and anxiety even though I know I am dying. I now can take charge of the rate of decline to some extent, get angry, cry, accept and start dancing before it is too late. I am using nutrition, body rolling and brain entrainment; and taking adderall to stimulate the frontal lobes (an unlikely pain reliever, but bypassing the pothole region of alarm and pain signals, I get relief -- for now). I find the prescribed "blockers" totally counterproductive and determined the hard way that they do nothing more than accelerate the plunge by blocking life sustaining hormone production indiscriminately.

    Beyond me, however, I pictured the scientist who had been recruited and groomed and funded and then asked to determine the amount of mercury to add to vaccinations. Any thinking person will agree that science is blackmailed into supplying some questionable tools for the business "all's fair" quest for profit. We all have to do things on the job we don't like, but some things are more damaging than others. Adding mercury to vaccinations has to go down as one of the most damaging.

    I can find no evidence that one single person injected with mercury could have kept it from migrating to the brain. My 1944 Webster's Collegiate dictionary, first compiled in 1932, lists mercury as a "virulent" poison and also lists "mecurialism" as a real word defined as "chronic mercury poisoning". Who can argue that a poison recognized for centuries is somehow not poisonous to most infants and toddlers by the mid 1930s? The FDA says we were "exposed". Were you "exposed" to your vaccinations?

    The issue now is public disclosure. It's not going to come from the drug companies who created the deadly cocktail and who profited from the result. It's not going to come from Congress who is backpeddling before the first verdict is in.

    This is the moment in history when honest scientists must stand up to their fellows who have fallen into corruption, even though through no fault of their own. The principle offenders are dead now, but their corrupt decision and activity lives -- and dies -- in all those injected over the past sixty years.

    This is the "exposure" that Americans need. 9/11 has left us all waiting for the other shoe to drop. This is the shoe that has dropped and continues to drop every minute of every day as this country's precious people all present the symptoms of mercury poisoning, to one degree or another. Are Americans to be left to twist in physical discomfort of autism to Alzheimer's and not be told what has kidnapped their joy?

    We deserve to know. We can reduce health costs exponentially as people press to help themselves and their loved ones to change their habits -- most will. We can redefine mental illness if not dump the label altogether. We must stop taking drugs that speed up the process of autoimmune cannibalization. Mecurialism must be recognized by Medicare and disability review to include people who were vaccinated during the years of this practice. Since there is no cure, it is taxpayers' right to have this disclosure. People who know can avoid stepping into expensive and catastrophic illness in ignorance. Needless to say, the drug companies are in the financial situation to help out directly and be held accountable to develop the correct help, if anyone even thinks they can or will.

    We can and will change the way we treat each other and think about each other's suffering. I am more compassionate and connected to reality. I never had a chance at life, but neither did you.

    Most important, my generation has some unfinished business. If the babyboomers are buried along with this dirty secret, the next, smaller generation will never have a chance for change and this nation will end as we know it. There is so much at stake here. If America is to continue, we have to clean up corruption, corruption of scientific knowledge, sadly, in the case of mass -- and deliberate -- mercury poisoning.

    If science does not take the political leadership it has been dependent upon for survival, America is gone forever, and with it, freedom itself. Our descendants will be bowing to the king of global economy and back to the times of Egyptian slavery. There is noone else who can step into the courtrooms of American and tell the truth about mercury poisoning and show that only the scientists with the best knowledge of how dangerous it is could have made those formulae. I know who was involved, and so do many of you.

    Regards,
    Bess Horsefall

    cc: everywhere